About to join the Club

Hello from New South Wales, Australia. I have read many of the postings here as I approach the date of my defibrillator implantation on 27th June 2007. I have learned much more here about little things to be aware of than I learnt from my doctor. Any suggestions for a newy welcome!

I need to check, but I think I am having a Medtronics defibrillator. I know it has three leads and that the pacing side of things won't actually be functioning, just recording, because my doctor said with my type of dilated familial cardiomyopathy, the pacing can actually be detrimental to the heart muscle.

I am a 49 year old woman, and have known about my cardiomyopathy for about 9 years, before that I was pretty much brushed by doctors, mostly I think because they didn't know what was wrong.

Genetically my problem is caused by a mutation of the Lamin A/C gene which affects cardiac and skeletal muscle. Anyway...just in case anyone else out there knows about this problem. I have a "big" heart and a conduction disorder with LBBB.

I am a bit nervous about the operation and the 'afters'. Most friends try to jolly me along when I say I'm having it put in, "Oh well, that's nothing to worry about. Lots of people have them". So true, but I'm still new to this.

So, Hi! And thanks for the opportunity to talk to people in the same boat. (I don't actually know anyone with a defibrillator.)

Bye for now.

5 Comments

Hi and welcome!

by bambi - 2007-06-16 05:06:40

Hi Jeffia,
I'd also like to send you a warm welcome to this group of wonderful people! I, too, have a pacemaker and no defibrillator, but like Jessie said, there are many on this site that do! It's absolutely normal for you to be nervous about the implant. Everyone's experience and feelings are unique to them, but I think you will be pleasantly surprised at the ease the actual surgery is. Most of us feel better after, and the recovery isn't too bad, just kind of inconvenient with the arm restriction and not lifting anything heavier than 5 lbs. Anyway, the archives are full of posts about helpful hints, what to expect, ect. So welcome and keep us updated!
Bambi

welcome

by jessie - 2007-06-16 12:06:03

hi jeffia, welcome to the pacemaker club. i am 65 have had a medtronic dual lead for a year now in august. my electrical system more or less shut down so i had braddychardia slow pulse. i do not have a defibrillator but many do and i am sure they will write to you. this is an excellent support group. i have met many wonderful people here and it has helped me so much this site. so some people are very flippant and might say oh yes well lots of people have them. most people are uncomfortable and don't know what else to say. some people think you are going to die suddenly in front of them. lol lol so welcome again and i look forward to hearing more about you. jessie

australia

by jessie - 2007-06-16 12:06:07

hi also there are 3 wonderful people on the site form australia. one is a young nurse. the others are rewirredaussiegirl aka kay and i can't think oh yes blueaustralia. they actually have met and the husbands get on. can you believe it? so i can't think of the name of the nurse but i think it might be amanda take care jessie

nice to hear from you

by Jeffia - 2007-06-17 06:06:28

Thank you so much for responding to my first posting. I confess some days I feel scared and not as in control as iI may have sounded originally. Just thanks for taking the time to read my post and write to me.

Jeffi


Hi from a fellow Aussie!

by Helen - 2007-06-18 08:06:37

Hi Jeffia,
Good luck with your up-coming procedure! I had a pacer placed last November , aged 36 and also had the "don't worry about it - lots of people have them put in". And believe it or not - they do! They must also go through the same worries and concerns that both you and I are experiencing or have experienced. It's not easy but isn't it great that something can be done to help us live a normal life. This pacermaker club is fantastic, supportive and educational! I am surprised that there isn't a support group of any sort here in Australia. Good luck - drop me a line if you would like to chat.
Helen in Qld.

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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.